KEY

Population

AC: Autistic children and/or teens

AA: Autistic adults (also includes mixed sample, e.g. those with autism and other developmental disabilities)

R: Non-ASC but similar behaviors/symptoms (e.g. elopement among seniors with dementia)

G: Standards/practices for general population

V: Manufacturer or vendor literature

Basis for

: Quality of life goals

+: Design guidelineS

The modern evidence-based (EB) movement in medicine began in the 1990s to advance “the conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patient. The practice…means integrating individual clinical expertise with the best available external clinical evidence from systematic research” (Sackett et al, 1996). In other words, doctors and healthcare professionals would make decisions about treatments – if, which, and how they should be applied – based on the best available research, one's clinical or professional experience, and how it suited a patient's clinical state, predicament, preference, and choice (Sackett et al, 2000) (see Figure 2.1). Formalizing this movement was the formation of the Cochrane Collaboration in 1993, which today is an international network of over 31,000 people whose mission is to systematically identify, evaluate and summarize scientific evidence for specific healthcare treatments or practices.

The EB approach in medicine eventually morphed into other fields: public health, nursing, social work, criminal justice, management, education, among others. In addition to the Cochrane Collaboration, other professional organizations established assessment criteria and procedures for identifying evidence and effective interventions in respective fields and professions. With a legacy of empirical research and funding over the past several decades, researchers and practitioners in these fields have been able to assemble extensive portfolios of research studies that shape evidence-based practices (EBP).

What appeared as clear-cut definitions and thresholds for EB medicine, however, often becomes a quagmire in other fields. What constitutes “evidence,” for example, and are there different types? How does one evaluate “best” when alternatives are few? What criteria are used to judge whether one technique is “better” than another? Does “evidence” constitute only empirical investigations? Is evidence allowed only when the outcomes are measurable and observable? How do we base decisions when non-measurable outcomes – such as the homelike “feel” of a place compared to an institutional one – are issues at hand? How does one proceed when there is insufficient research or evidence?

We wrestled with these fundamental questions when trying to lay an evidencebased foundation for the design guidance in this book.

Just as neurotypical people have strong opinions about where they would like to live and in what type of home, so, too, do people with autism. The desire for an amenityrich neighborhood and a house that reflects individual ideas of what makes a home and is filled with features that support individual needs and preferences is similar for most people, with and without autism. As anyone who has moved recently can attest to, identifying and locating such a place often is challenging. For people with autism, this may be even more so. To facilitate the process, the following design guidelines, in conjunction with the ten quality of life goals described in Chapter Three, were created to provide a foundation for understanding the potential suitability of a home, outdoor environment and community and what modifications might be needed to increase its livability.

Covering aspects ranging from neighborhood selection to appliance recommendations, the guidelines are intended to assist people with autism, their families, housing providers, developers and designers identify residential design factors that create a rich, safe, supportive and sensory-appropriate home environment. The recommendations outlined in the following pages attempt to address all the potential areas that might affect a person with ASC and for that reason are not intended to be adopted wholesale. As with the population at large, the requirements and tastes of people with autism vary widely: what is appropriate and necessary for one autistic person may be irrelevant or even detrimental for another. For example, open shelving that permits visual access of belongings may be essential for one autistic person's wellbeing but would create too much visual stimulation and confusion for another.

To uncover these specific issues and create an appropriate design response, it is necessary to work closely with future residents whenever possible, using the guidelines as a tool to direct discussion and design development. Given that difficulties with communication is a hallmark of autism, it may be necessary to utilize innovative methods to understand the wishes and needs of autistic clients. Gaudion and McGinley (2012) discuss a co-design workshop strategy that brought together residents, support providers and family to formulate ideas for an outdoor living space.

Why this book now?

Public attention on autism has soared in the last decade. In plays, movies and on television, characters with autism or autistic traits are expressively portrayed. For example, in 2009, three very popular movies – a romantic comedy, a biopic of an accomplished animal science professor, and an animated film of pen pals – all revolved around a character with Asperger's syndrome. Between 1997 and 2011 the number of books and articles annually published about autism increased more than sixfold (Solomon, 2012). For several years celebrity comedian Jon Stewart has headed a starstudded telethon – “Night of Too Many Stars” – to support the U.S.-based organization, Autism Speaks. Founded in 2005 by grandparents of a child with autism, Autism Speaks has become in less than ten years the leading private autism research advocacy organization in the world, with over $58 million from funding sources in 2012 alone (Autism Speaks, 2013). Not since the height of the AIDS crisis has there been such an aggressive campaign for funding and research, much of this spurred by parent-affiliated organizations (Solomon, 2012). One parent group, Cure Autism Now, pushed the U.S. Congress to pass the 2006 Combating Autism Act, providing a billion dollars of spending over five years for research on autism and related disorders over five years. In 2011, a three-year extension of over $600 million was ratified for further research. In 2012 the largest single grant for autism in the world ($37.8 million), and the largest for the study of any mental health condition in Europe, established European Autism Interventions – A Multicentre Study for Developing New Medications (EU-AIMS), a multi-national, multi-industry initiative to discover and develop drugs for autism. In September 2013, the World Health Organization (WHO) convened its first conference on autism, the initial step in enacting the recently passed World Health Assembly resolution on autism.

Within this tempest of media attention and funding mechanisms are the lives, aspirations and frustrations of millions of individuals with autism, young and old, in homes, schools, and communities: an estimated 2 million Americans, over 3 million Europeans, and millions more worldwide. The numbers and increasing prevalence rates have spurred legislation, research and initiatives for not only discovering the cause of autism, but also how to treat, educate, and support individuals as they go about their daily lives.

Introduction

The policy of deinstitutionalization – replacing complete institutions of long-term care with residences and services in the community – was first articulated in the late 1960s and early 1970s, but it took decades to see noticeable, widescale changes on the landscape (Campaign for the Mentally Handicapped, 1972; Kugel and Wolfensberger, 1969; Mansell, 2006). In North America, Europe, Australia and New Zealand, this transition from large residential institutions to networks of community-based living with support services is steadily progressing. Sweden and Norway are the leaders in this transition, where all institutional provision has been replaced and where the law now provides the right to community services (Mansell, 2006).

Nonetheless, many critics believe that the progress is much too slow, and that initiatives for creating and supporting residences that meet the growing numbers and needs of adults on the spectrum – as well as others whose health and capabilities are not being met by current housing market or government practices and policies – are too few. Our efforts in this book have been to provide guidance – grounded in available research and experts’ reflective practice to date – of design features and spatial characteristics that can advance a generation of homes and residential developments that resonate with the aspirations of those on the spectrum.

Attention to adults with autism is relatively fledgling within research arenas as well as service programs, including housing provision. For parents and for those aging out of the school system, the time for laser-focused attention on issues affecting the lifespan – not just the childhood and adolescence of autism – is now, not for some distant future. And it is finally happening – likely too glacial a movement for many who are desperate for immediate solutions – but with a vigor and commitment that has not been witnessed before.

What we have profiled in the previous chapters was gleaned from current practices, thinking and research. But there are applications and approaches on the horizon that we believe will further guide the next generation of environmental design and development for those on the spectrum – not only in terms of what is built or renovated, but also in terms of how residential spaces are used and how individuals can advocate for what works best for them.

The homes and neighborhoods where adults with autism live may significantly affect the quality of their lives. Yet most housing providers, developers, architects and sometimes even family members are unaware of how specific residential features and neighborhood amenities can affect the comfort, pleasure and well-being of those on the spectrum. Designers and housing providers need to know how best to foster and create autism-friendly environments and how residents can be supported to not only live but thrive in their homes and communities. Optimal design and neighborhood selection at the outset can help avoid later problems that may require a subsequent move, which could prove difficult for residents who need stability and consistency in their lives.

As previously mentioned, there is no single “type” of autism. Likewise, there is no single type of housing solution. In order to let potential residents as well as housing providers and architects decide which housing features may work best for whom, we developed ten quality of life design goals, crafted from a synthesis of available research. Residences and neighborhoods should be designed and selected to facilitate opportunities for residents to realize those goals. Most of these goals – foster health and wellness, ensure safety and security, for example – pertain to any individual, with autism or not. However, how these goals are achieved and what they mean to those on the spectrum may be quite different or unexpected from what an architect or housing provider has encountered in prior experiences with neurotypical clients. The pleasure of “being social” by sitting quietly in the same room with someone else, not communicating or interacting but engrossed in one's own pursuit or activity, may not appear to be very enriching social behavior to an architect familiar with designing college student residence halls. In fact, it may remind the architect more of children who engage in “parallel play” than of adults “being social.” But having a quiet place for such “parallel play” may be much more desirable for a spectrum adult than being in a lounge with many others who are bellowing at a missed touchdown pass as they watch a football game on a large-screen monitor.